a note from Claudia
Jun. 22nd, 2006 10:34 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
chelidonI'll attach part of a note C sent out this morning to a circle of amazing folks who have been doing some very specific healing work for/with her. Some of you are part of that work, and many others are part of the wider circle of friends and family who have been sending much-appreciated support, energy and good thoughts, so I got Claudia's okay to send this out to all of you who have helped so much.
Forest is still sleeping as of almost 11am this morning, he definitely needs it (and so does C, she gave herself leave to go back to bed for a wee bit until he wakes up) He's sleeping on one of the futon-beds, just outside my office. I can look up and see him from my chair as I work (and there's a lot of backed-up work from the past few weeks, three freelance pieces due today and tomorrow, whee, but I can't count on getting much work done next week, either). I just checked and repositioned his legs so he wasn't twisting his torso in ways he shouldn't. Last night I took "night meds" duty, so C could get a full night's sleep for the first time in almost a week. For a while F will need his meds every 2-4 hours, kinda like 2am feedings, it brings back memories ;> Later today we'll work with him on the stairs to see if he can safely handle them (with assistance), so he can go up to his own room, or down to the in-law apartment where C's folks will be staying for the next month or so. As I said to a comrade earlier today, I guess he's doing the same thing we all are -- taking one step at a time, doing what you can do, wanting to leap on ahead, trying to be patient, trying to notice when it hurts, deal with the pain, and keep taking those steps forward. One at a time. Ah-yup.
Ah, my beamish boy is up, and quite ravenous, asking for eggs *and* bacon (please). I'll take that as a very good sign.
-------
Hello all, we're home, we're fine, and I have all of you to thank for the incredible amount of support and energy that's been coming my way. Many times before I have sensed the energy of a magical circle or working, but I have NEVER been a part of anything like this, nothing like the power and magic of this one. I want to share with you what you have all done.
I have been off all thyroid medication for 10 days, I have no functional thyroid left in my body, my blood chemistry is showing my steady trend down and bottoming out to severe hypothyroidism (as the doctors wanted ), I have been sleeping at my son's bedside in a hospital room with monitors and alarms going off repeatedly throughout the night (sometimes 20 times), with nurses coming in to do neuro checks every 2 hours (he's on a lot of narcotics for a little guy, we had to be sure he's OK, his heart and breathing are constantly monitored as well) and give meds every 4, with a child who woke up at least 2 times a night whimpering in pain, needing more meds, needing me to hold his hand, help him use the urinal, read to him, sing to him for a hour or two, until the pain went back down, and he could sleep again. I have been waking up at 5, doing my paperwork and organizing the Speech dept daily caseload, putting out fires, then back to his room at 6 to be there when he wakes, to hold hands, encourage, console, bring juice, talk about pain and being scared and what it is to be brave and hang tough, to arrange for (and prepare him for) the day ahead: goals for Forest: do deep breathing games / arm exercises every hour for 5 minutes; out of bed for breakfast; practice not bending wrong; try hard to drink and pee enough so they don't want to put the catheter back in (please God no); don't bend your wrist this way so they don't have to do another IV (again); don't scrunch up on your back so the epidural doesn't come out (again). And through it all, distract, play, be silly, read stories, play games, watch cartoons...anything, anything, anything to get a little smile, to take him away from the world of ouch and scared and loss of control and of the familiar. And Daddy comes in at 8:30AM and we give each other kisses and our daily "reports" of how the night went and what must be done today, and then put on my stethoscope and lab coat and go the Neuro Rounds, and see my patients with head injury, and strokes, and the brain tumor that is getting worse no matter what we do, and hold the wife's hand as the Palliative care team comes and the Hospice information is provided ("we think it will be weeks, not months, until it's time"), follow up with doctors, and insist / convince that this test does need to be done, NOW, and attend meetings, and supervise the new speech therapist, and then heat up lunch and back to the room at 1 pm to sit with my boys and hear about the morning's progress and little triumphs, and scary stuff, and then kiss Chelidon and send him back home so he can start his work day and I can help the child stand up (without bending) and walk to the bathroom (the pain and the narcotics making him sometimes dizzy, always unsteady, and the don't pull on the IV pole, don't pee in the toilet, pee in the container so we know how much we've got) and sponge baths and Nintendo and what's wrong?, the medication isn't working anymore? and problem solving and encouraging, and teaching that even when you feel crappy it's not OK to be rude, and organizing who can visit when, and the huge blessings of friends and family who come after work to visit, to stay with the boy an hour so I can go outside the hospital, and have a margarita (NO SALT!) and breath for a while, then back, and meeting the night nurses and planning for the evening, the meds, how to get through, and play a game and watch a movie and no you're slouching again honey, you can't do that, it will make it hurt more, and stories and call Daddy for the "night night song" and hold the little hot hand because the fever is back and sing, and sing, and sing until the breathing changes and ... do it again, and again, and again
Throughout all of this, I was always tired, but never exhausted, WHENEVER I needed more energy, I just reached out, and it was there. It was literally like I was floating along, about 3 feet above my physical energy level. I feel fine now, I'm tired in a sort of gentle fatigued kind of way, but I really feel fine. It's magic!
** Love to you all** Claudia
Forest is still sleeping as of almost 11am this morning, he definitely needs it (and so does C, she gave herself leave to go back to bed for a wee bit until he wakes up) He's sleeping on one of the futon-beds, just outside my office. I can look up and see him from my chair as I work (and there's a lot of backed-up work from the past few weeks, three freelance pieces due today and tomorrow, whee, but I can't count on getting much work done next week, either). I just checked and repositioned his legs so he wasn't twisting his torso in ways he shouldn't. Last night I took "night meds" duty, so C could get a full night's sleep for the first time in almost a week. For a while F will need his meds every 2-4 hours, kinda like 2am feedings, it brings back memories ;> Later today we'll work with him on the stairs to see if he can safely handle them (with assistance), so he can go up to his own room, or down to the in-law apartment where C's folks will be staying for the next month or so. As I said to a comrade earlier today, I guess he's doing the same thing we all are -- taking one step at a time, doing what you can do, wanting to leap on ahead, trying to be patient, trying to notice when it hurts, deal with the pain, and keep taking those steps forward. One at a time. Ah-yup.
Ah, my beamish boy is up, and quite ravenous, asking for eggs *and* bacon (please). I'll take that as a very good sign.
-------
Hello all, we're home, we're fine, and I have all of you to thank for the incredible amount of support and energy that's been coming my way. Many times before I have sensed the energy of a magical circle or working, but I have NEVER been a part of anything like this, nothing like the power and magic of this one. I want to share with you what you have all done.
I have been off all thyroid medication for 10 days, I have no functional thyroid left in my body, my blood chemistry is showing my steady trend down and bottoming out to severe hypothyroidism (as the doctors wanted ), I have been sleeping at my son's bedside in a hospital room with monitors and alarms going off repeatedly throughout the night (sometimes 20 times), with nurses coming in to do neuro checks every 2 hours (he's on a lot of narcotics for a little guy, we had to be sure he's OK, his heart and breathing are constantly monitored as well) and give meds every 4, with a child who woke up at least 2 times a night whimpering in pain, needing more meds, needing me to hold his hand, help him use the urinal, read to him, sing to him for a hour or two, until the pain went back down, and he could sleep again. I have been waking up at 5, doing my paperwork and organizing the Speech dept daily caseload, putting out fires, then back to his room at 6 to be there when he wakes, to hold hands, encourage, console, bring juice, talk about pain and being scared and what it is to be brave and hang tough, to arrange for (and prepare him for) the day ahead: goals for Forest: do deep breathing games / arm exercises every hour for 5 minutes; out of bed for breakfast; practice not bending wrong; try hard to drink and pee enough so they don't want to put the catheter back in (please God no); don't bend your wrist this way so they don't have to do another IV (again); don't scrunch up on your back so the epidural doesn't come out (again). And through it all, distract, play, be silly, read stories, play games, watch cartoons...anything, anything, anything to get a little smile, to take him away from the world of ouch and scared and loss of control and of the familiar. And Daddy comes in at 8:30AM and we give each other kisses and our daily "reports" of how the night went and what must be done today, and then put on my stethoscope and lab coat and go the Neuro Rounds, and see my patients with head injury, and strokes, and the brain tumor that is getting worse no matter what we do, and hold the wife's hand as the Palliative care team comes and the Hospice information is provided ("we think it will be weeks, not months, until it's time"), follow up with doctors, and insist / convince that this test does need to be done, NOW, and attend meetings, and supervise the new speech therapist, and then heat up lunch and back to the room at 1 pm to sit with my boys and hear about the morning's progress and little triumphs, and scary stuff, and then kiss Chelidon and send him back home so he can start his work day and I can help the child stand up (without bending) and walk to the bathroom (the pain and the narcotics making him sometimes dizzy, always unsteady, and the don't pull on the IV pole, don't pee in the toilet, pee in the container so we know how much we've got) and sponge baths and Nintendo and what's wrong?, the medication isn't working anymore? and problem solving and encouraging, and teaching that even when you feel crappy it's not OK to be rude, and organizing who can visit when, and the huge blessings of friends and family who come after work to visit, to stay with the boy an hour so I can go outside the hospital, and have a margarita (NO SALT!) and breath for a while, then back, and meeting the night nurses and planning for the evening, the meds, how to get through, and play a game and watch a movie and no you're slouching again honey, you can't do that, it will make it hurt more, and stories and call Daddy for the "night night song" and hold the little hot hand because the fever is back and sing, and sing, and sing until the breathing changes and ... do it again, and again, and again
Throughout all of this, I was always tired, but never exhausted, WHENEVER I needed more energy, I just reached out, and it was there. It was literally like I was floating along, about 3 feet above my physical energy level. I feel fine now, I'm tired in a sort of gentle fatigued kind of way, but I really feel fine. It's magic!
** Love to you all** Claudia
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Date: 2006-06-23 08:09 am (UTC)